Tanisha Flemming who has dysphagia, which puts her at risk of choking to death, was told she would no longer be receiving NDIS funding for therapy.
Photograph: Council for Intellectual Disability

The federal government has backed down over controversial changes to the national disability insurance scheme that pulled funding for swallowing therapy from people living with life-threatening dysphagia.

Guardian Australia last week revealed that 19-year-old Tanisha Flemming, who has a rare genetic condition, was among the people who had been told they would no longer receive funding for the therapy, which her mother said was vital to help keep her alive and give her a decent quality of life.

The money was removed from NDIS plans because the National Disability Insurance Agency wanted state health departments to fund the therapy for people like Flemming, who lives with physical and intellectual disabilities.

But the minister for social services, Paul Fletcher, on Thursday announced interim funding would be available through the NDIS.

NDIA under pressure after funding for ‘life-threatening’ condition axed

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“Until long-term arrangements are agreed between [the commonwealth and state] governments, the Australian government has decided that the NDIS will fund the ongoing assessment and monitoring of meal plans for NDIS participants with dysphagia who aren’t in a hospital or acute-care setting,” Fletcher said.

“I believe that the NDIS funding these supports in the interim is the responsible action to take until the roles and responsibilities for dysphagia have been agreed by governments.”

Flemming’s mother, Bronwyn, was informed this week her daughter’s NDIS plan would now include funding for a speech therapist to help with her swallowing.

Tanisha sometimes chokes up to a dozen times a day and her mother lives in fear that she will choke to death. Until the funding was cut, she had been receiving support through a speech therapist who would monitor her swallowing, give her exercises and advise on what foods she should eat.

Bronwyn Flemming said the entire process had been “very frustrating”.

“It’s been a terrible time for our family,” she told Guardian Australia on Thursday. “[Tanisha] is very happy that she is now going to do these things again. More than anything, it was a relief that she’s going to get the therapy she requires.”

The government had been facing a lobbying effort from the Council for Intellectual Disability, which had called on Fletcher to intervene.

“It’s great that Tanisha now has the therapy she needs, but it just should not have been so hard or her mother to get that,” Jim Simpson, CID’s senior advocate, told Guardian Australia on Thursday. “The NDIS should be about making things easier.”

Simpson said it was vital that the funding was made permanent and it be available for people before they were first admitted to hospital owing to dysphagia.

“In other words, when the signs emerge of someone having swallowing problems, which might be someone coughing or choking a little bit, that’s when you need the speech therapist in to do the assessment,” he said.